Life-Threatening Illness & Reality Check

Those of you who have browsed my posts over the past year have seen ocassional mention of my chemotherapy treatments. I will give you the story and then ask a couple questions of the group. (Most of you are younger than this ole' Bear and your experience with this sort of thing is/was probably with your parents or grandparents.)

I was diagnosed with Hodgkin's Lymphoma back in mid-1996. The same type of cancer that hockey great Mario Lemuix (sic?) was hit with. During that autumn I went through radiation therapy, every day, for four (4) months. Lost a bunch of weight, because I couldn't swallow (usually necessary part of regular eating).

In check-ups and tests and scans over the course of six (6) years I was pronounced (after five years) "cured".

In February of 2003 I started having fevers and severe night sweats. The trusty internet search led me to "menopause". Heh, heh.....not quite for this guy. That same Google search answered "Hodgkin's symptom". Numerous tests followed and, lo and behold......the evil Mr. Hodgkin's had returned. So, I was placed on the normal chemotheraphy regimen for Hodgkin's....ABDV (each letter signifying a different drug that they would pump into me).

I began chemo in July, 2003, and continued until mid-February, 2004. I lost some weight, gained it back when my doc scolded me for that. I lost all my hair....yes, ALL my hair. (I had been a bearded dude since 1969 !!!). My gosh, I looked like a dork.....ahhh, but with my bald beanie the youngen's checked me out.

In March and April I had the normal tests and scans.....PET Scan (very-sophisticated imaging process), CAT Scan, bone marrow biopsy, and a biopsy of a suspected lymph node. ABVD chemo works for Hodgkin's about 99% of the time. Can I win the lotto? No. Can I win a 50/50 drawing at a club? No. Can I fit into that 1% who don't get cured with normal ABVD? Yes.

Next step.....returning in mid-May to the University of Michigan Cancer Center (one of the best in the world). I will be indoctrinated with information on what is called high-dose chemotherapy, with a bone marrow stem cell transplant. Not fun.

They will inject me with a stem-cell growth-enhancing drug, wait awhile, then harvest stem cells and freeze them. Then, they give me 24-hour-a-day chemo for a few days.....high-dose. It kills everything in the bone marrow. After the chemo drugs have been pushed through me, they reinject the stem cells. I will be in the hospital for 2-4 weeks and off work for another 4 months. (I have never spent a day in the hospital, except age 5, couple days for tonsils being ripped out.)

Sidebar Note: In 1996 my wife was diagnosed with MS. Except for a couple flare-ups it has stayed inactive.

So.....everytime my wife and I start talking about "woe is us"...."bad luck".....we remind each other about REALITY CHECKS.

During a couple consultation visits at U of M's Cancer Center we sat in the waiting room waiting to be called. The room was filled with very young children, most without hair (because of chemo treatments), some too weak to get out of a wheelchair, some with chemical tubes hooked to them. Seeing these young cancer victims is emotionally draining. You just want to hug them and transfer what ever is left of your life into their bodies, so they can live longer. This is a real REALITY CHECK. My problems seem so small compared to them.
_____

My two (2) questions:

Have any of you had experiences with life-threatening illnesses?

Have any of you ever experienced REALITY CHECKS that seem to make your problems seem insignificant.

As for your questions, the only life threatening experiences I've every come close to is falling out of a tree and getting sucked into the undertow of the ocean.
For your second question, I see things everyday that make me more humble.

A guy once told me, "Do not have any attachments, do not have anything in your life you are not willing to walk out on in 30 seconds flat if you spot the heat around the corner."

Best of luck Bear, a dear friend, hes only 21 is facing this EXACT problem. His long time girl friend is terrified. They had been bitching about small stuff the week before they found out he was ill-life is a whole new world for them now.

I suffered early cervical cancer-I cant have kids but damn happy to be alive. Had Spinal Menigitis (sp?) at 6 and ran a 104.6 fever for over 12 hours went into a coma and should have died-damn happy to be alive.

Folks are truly right when they say dont sweat the small stuff-save that for the big ones that will scare you down to your core. You and your wife are in my prayers and thoughts.

Remember this motto to live by: "Life should NOT be a journey to the grave with the intention of arriving safely in an attractive well preserved body, but rather to skid in sideways, chocolate in one hand, martini in the other, body thoroughly used up, totally worn out and screaming 'WOO- HOO what a ride!'"

I too have been lucky thus far to avoid life changing ilnesses or accidents. All my best to you and your wife Bear!

"Growth is inevitable and desirable, but destruction of community character is not. The question is not whether your part of the world is going to change. The question is how." -- Edward T. McMahon, The Conservation Fund

My father passed away from lung cancer; He had full treatment: surgery, chemo, rad.
I learned many lessons as a 14 yr old, very glad I never smoked.
I have type 2 diabetes, self testing 3-4 x @ day.
Got hypertension under control.

So far, my husband and I have been lucky, although we've both had people close to us who were quite ill. And as for a reality check, one of our best friends is serving in the USMC in Iraq. Knowing what he must be going through (especially now) puts everything in a different light.
Best of luck, Bear. Amass all the support you can, including here on Cyburbia. From what I've been told, it makes a world of difference knowing there are lots of people supporting you. By the way, one of my HS teachers, one of the most popular teachers in school, went through a similar process several years ago. He came through fine and is still teaching and riding his motorcycle.

Close to home...

Wow is this is close to home.
Bear-
Best of luck in your treatment. It worked for my uncle. He was not going to live without stem cell replacement. His was done at University Medical Center in Tucson. That was two years ago and he just celebrated his 60th birthday. We are all grateful he is here because he almost didn't make it.

I was diagnosed with cancer about three years ago at age 26. Surgery and radiation went well and I have been living with my 95% chance (doctors of course) of it never coming back. I get my usual check ups every six months and I still thank God that I went to the doctor when I knew something wasn't right. If I had waited 6 mos or a year I might not be here. This year I got skin cancer. Strange thing is I stay out of the sun. I am predisposed for it and I had always anticipated that I might get it, but 20 years from now!

Sadly my step father in law is suffering from many liver related problems and needs a transplant badly. For anyone who does not know about the transplant list, be thankful you don't. A lot of people die waiting for an organ. It is highly likely that he won't make it another month without a transplant.

Reality sucks, so I try not to check it too often. Again, best wishes and I hope that things go well for you and your wife.

Bummer....

Bear:

Used to work with a soil scientist in Va. Two seconds after lifting my head from reading a perc. hole depth, a 4 inch rock rocketed straight through the space my brain previously occupied (would have removed it had I not moved!) That was a close call.... Only 19 at the time and did look at things different after that.

Take a look at a web site called MEDSCAPE www.medscape.com register with the oncology section and you'll have access to the latest study/research and be able to e-mail experts with questions. Don't worry about registration, its free and they don't care if you're a doctor or not....GREAT SITE ....also medications and desriptions of every disease known.....

Strange timing for this thread. I just got the e-mail a couple of hours ago that my planning directors son passed away this morning from Hodgkin's Lymphoma. It's really a shame because he was only in his early thirties and his Mom (my boss) has been trying to convience him for months to move from his rural Idaho home so he could get better care back here in Pa., but he just wouldn't do it. Quite sad really...

Good luck to you Bear. My thoughts and prayers are with you as you undertake this procedure.

I suspect you know by now that, yes, I have had a life-threatening illness (from which I am still recovering) and, in fact, I live daily with a potentially life-threatening and incurable genetic disorder. The short version: 36 years of living with an undiagnosed genetic disorder takes a while to recover from. Best guess: I probably had developed multiple anti-biotic resistent infections due to years of treatment that wasn't sufficiently agressive -- through no one's fault. There was no way for the doctor's to know.

My "reality check" is this: the doctors were trying to reassure, yadda yadda, and doing a very poor job of it because they clearly thought this was Bad News. My position was "I have lived with respiratory problems and other health problems my entire life. Now we have a Name for it (something better than "crazy"). Now I can get the treatment I need. This is Good News."

I have trouble convincing others of that -- that knowing I have a genetic disorder is Good News. I tell people I have a genetic disorder and they feel sorry for me. One guy kept harping on it and I told him something like this: "Should I feel sorry for you because you were born MALE? Because you do not know what it is like to be female? Is that reason to PITY you? I was BORN this way. My body has never been normal. I don't miss being 'normal' because I never was. Life is so much better since they diagnosed me. My life was MUCH harder when I had no diagnosis. I needed everyone's pity when I had no diagnosis and was being villified for my picky eating and other things I did to stay alive. I don't need it NOW. My life has never been Better."

Speaking of children: my oldest son has the same genetic disorder that I have. He has not been on antibiotics in about 6 years because of my efforts (including homeschooling him -- his mysterious health problems were the real reason we pulled he kids from school 5 1/2 years ago). He was ID'd for this disorder the month he turned 14. His early childhood was much easier than mine because I was protective of him, in defiance of all the people who thought was a neurotic and overprotective mom, "spoiling" the kid. Because I nearly died, got ID'd and they subsequently tested both kids, he will never suffer the way I have with his medical condition. It was worth nearly dying. It was worth whatever I suffered. I don't have a single regret.

In honor of how you are facing this with dignity, with a larger perspective than your own suffering,

Hey, best wishes to ya Bear, I had not idea you'd been through all that and are facing more. Luckily - yet sadly - I have not had to deal with such things personally, the men in my family do not live long enough before falling over from bad tickers.

No life-threatening illnesses here. My reality check: while my son and I had some frightening experiences at the hands of the ex-, the reality check is parents whose children are actually murdered by their ex-. It didn't make our problems seem insignificant, but it does make you realize it could have been much worse.

Bear - I am truly sorry to hear your news. I have had some close personal calls with the big "C" and know how bad it can be. One of my closest friends was diagnosed with cancer when she was fifteen. It went into remission and came back five times. She passed away shortly after her 21st birthday, just a month after finishing college.

My brother was diagnosed with leukemia the same year. He underwent the treatment you are decribing, except with donated bone marrow (it helps to have an identical twin). You already know how the chemo and radiation makes you tired and sick. The bone marrow replacement then suppresses your immune system. There is a period of months before you are back to normal. The good news is the success rate is good. My brother completed treatment twelve years ago and is perfectly healthy now, with no hint of a problem.

Bear Up North I wish you all the best in your ongoing efforts to win this battle. I'm pulling for you.

Bear, I know what you mean about the children. This is my story.

Three days before my son's fourth birthday, on a warm late winter day, my son fell from the swingset in the back yard and landed awkwardly. I yelled for my wife and we grabbed him up in my arms and headed for the hospital. I could feel the two separate pieces of bone in his thigh rubbing against each other as I held him on the ride to the hospital. When we got there, the bureaucracy kicked in -- and no matter how I tried to explain that it was serious, we were told to wait in the lobby along with 15 -20 other people. My son was as brave as he could be, but he was clearly in pain. After what seemed an interminable wait, a nurse came out and asked for "Mrs. Smith". Mrs. Smith -- whomever she was -- declined and told the nurse to take my son first. It was the kindest thing anybody has ever done for me and a debt I try to repay every day, in some small way. (Little 'dunker had a spiral compression fracture of his left femur. His treatment and recovery are a story for a different day. He is a happy, healthy 7yr old today.)

Optimistic Gendunker.

Labor is prior to, and independent of, capital. Capital is only the fruit of labor, and could never have existed if labor had not first existed. Labor is the superior of capital, and deserves much the higher consideration.Abraham Lincoln

Cancer appeared early in my life... A grandmother died of breast cancer when I was 5 and a classmate died of brain cancer when I was 14... No happy stories involving cancer here, but people have survived so don't get depressed, you can make it!

After reading your post I remember how I went through bad patches myself.
Nowhere near as threatening as Cancer.
My present viewpoint about these things are a result of the mixture of a few incidents that happened to me and more to people around me.

1.Asthma has been in mothers family for generations. So I have seen my grandma, uncle and my mother and brother go through some of toughest attacks over the years. But through discipline and overall measures taken by them they are stable now with my brother hardly having any major problems.
One thing which is common to all of them of them is GRIT . So you need to have GRIT. It will pull you through.

2. One of the worst was an attack of Acute Gastroenteritis which left me totally dehydrated and with fatally low Blood pressure. The emergency was well handled and I recovered only after rigorous medical care and support from family.
Then despite the constant support of my mom, dad, uncles, aunts and everybody else I lost all physical energy, I hadn't eaten for two weeks or so( solid food I meant) and suddenly .I lost hope. It was after that my situation started deteriorating. I hadn't realised that the body takes time to recoup and I was already showing signs of improvement.Once I gave up mentally I started sliding. Can you believe it, Each and every member of my family( both from my fathers and mothers side put in their energies to save me( this planner :-P ).
They showed me signs of positiveness when my mind was blurrred and fuzzy and when I thought that 'this was my end'. They raised the energy within me to say yes all one needs to do is to shake oneself up from the despondency. I remember the day I lost hope. That would be a horrible day for anybody. How could a person who energised others, who pepped up others could go down like this( blah blah...)
Well the gist is :Never Lose Hope.
Bad times come for everyone.( in your case it seems to be aprolonged case of bad times, but hey there are many positive cases to take heart from) Even the strongest have weak moments. Never shy away from taking support from your near and dear( Support System).

3. Look at people who are in a condition worse than you. All you need tois to make a visit to the hospital. You have already done that I think.

4. Try to meet doctors/specialists known to speak nicely to patients. A simple soft word from a doctor can do wonders and raise the spirit like anything.
Frankly I havent had very bad experiences. I try my best to assist neghbours, friends and relatives in emergencies. This keeps me going to the hospitals to see the plight of the people who really suffer. I try to calm myself whenevr I am restless( tough job really)
Till now life has been good to me
Now I am back to giving those high spirited talks. :-P
I can only share my experiences and views in this forum and like others wish you all the best in whatever you do.
I only hope that what I have said is of some use to you.

Keep smiling and Hey! try reading things you never thought you would read. try those hobbies which you always wanted but never found the time to do

Best wishes, Bear, for both you and your wife. My brother has MS, although after finding out he's had many many episodes.. but we all remain positive and it seems to help. Always remember, bald men are sexy!!